ReNU Syndrome UK
Renewing Hope for Every Family Affected by ReNU Syndrome
What is ReNU Syndrome?
A change in the RNU4-2 gene
A single change in this small gene affects how the body builds proteins from instructions in DNA.
One of the most common rare conditions of its kind
Around 100,000 people worldwide are estimated to have ReNU Syndrome — though most are still undiagnosed.
A new diagnosis for many families
ReNU Syndrome was only identified in 2024, so many families lived without answers for years or decades before diagnosis.
Every person with ReNU is different
Common features include developmental delay, low muscle tone, feeding difficulties, and complex needs — but each person’s experience is unique.
ReNU Warriors
Real families. Real stories. Real strength.
Read Samuel’s Story
Michaela shares her son Samuel’s diagnostic journey and how the ReNU community changed their lives.
Read Elodie’s Story
A family’s journey through uncertainty, diagnosis, and resilience — the power of love and advocacy through complex medical challenges.
Read Finley’s Story
Claire shares how her family searched for 19 years for answers, and how Finley’s courage is now turning into hope and support for every ReNU family.
Find your way
Help us reach more families
Every donation helps us support more families and raise awareness of ReNU Syndrome.
ReNU Syndrome UK is awaiting charity registration. Once registered, we’ll be able to claim Gift Aid on eligible donations from UK taxpayers.